Your Replies

  • April 22, 2016 at 5:40 pm

    Thank you, jk. We’ve been advised by her ASF to begin looking at alternative living arrangements (skilled nursing).

    October 28, 2015 at 7:16 pm

    Thank you, thank you, thank you, a hundred times. I appreciate your responses so much. We’re all beginning to lose hope. She used to have a fighting spark in her eyes, but after nine months of unrelenting severe tremor (cannot feed herself, read a book, use a tablet or e-reader, hold a paintbrush – the things that she used to love to do), I can’t see the fighting spark in her eyes that has been there through each relapse since last January. This is such a cruel disease. Each time she would work so hard in PT to make some gains, only to have the rug ripped out from under her with each relapse. I’m afraid we’re losing her. She was not in great health before the CIDP and is not responding well to any of the traditional treatments. We’re hoping her doctor will agree to try Rituximab/Rituxin next.

    Thank you again!

    July 12, 2015 at 9:28 am

    Thank you, Eldad. I appreciate your response. I think her doctor knows from oblique references he’s made, but at this point we really need someone to level with us so that we can help her make some decisions about living arrangements. She’s 71, lives alone, bought a new condo last October w a large mortgage and has needed 24-hour nursing care to live there for the past 2 months (after her third discharge from rehab since January). If she has a high level of axonal damage and may be facing years of intense therapy and treatment to be able to live independently again (provided a new treatment plan keeps her out of relapse), she can’t afford to keep her condo. She’s a strong, practical woman (30+ years as a social worker) and responds well when faced with bad news. She also gets the feeling he’s holding out false hope. We’ve already seen Peter Donofrio at Vanderbilt for a second opinion (he did the latest test). While that was immensely helpful, as it confirmed the diagnosis and got her a new treatment plan) I still don’t think anyone has really leveled with us about the extent of axonal damage. She’s gone a long time without the correct treatment. We have high hopes for the new treatment plan. It would just be so helpful for someone to say, “Look, there’s enough axonal damage that you could be looking at 1-3 years of treatment and therapy to be able to live alone.” Then she could decide whether she can continue to keep the condo or look at assisted living.

    Thanks again for your response. Thank you also to anyone who has additional advice.